“It’s not a realization that came to me easily or early on in my life as a chronic illness patient. It took me several years to finally recognize it and to see what had been in front of me all along.
Not until I marked my submission tracker with that most depressing word, “Declined,” did I make the connection. I realized that having a piece of writing declined and leaving a doctor’s appointment without any answers share many of the same emotions.”
Those paragraphs are taken from my personal essay, “Dismissals and Rejections — of Symptoms and Submissions,” recently published at Spoonie Authors Network. You can click here to read the essay in its entirety.
I’ve been told I have a positive attitude. I’ve been praised for not letting my autoimmune disease take control of my life.
I try. I try very hard to look at the bright side, to acknowledge that things could always be worse, to do the things I want to do pain or no pain.
But, in all honesty, the last couple of weeks have been really bad. Like trying-not-to-cry-as-I-walk-back-to-the-car-after-taking-my-son-to-school bad.
In our home, we don’t curse. Even words that other families might use, like “sucks,” isn’t a word we use. Except, occasionally.
Today is one of those occasions.
Chronic illness sucks. Chronic illness that causes chronic pain really sucks. There’s no rhyme or reason to it. For example:
Sleep does not equal less pain. I rarely sleep through the night. If I only wake up once, that’s a good night’s sleep for me. But the other night I did something I hadn’t done in a long time — I slept through the night. My body had a full night of uninterrupted sleep. I woke up, amazed to realize it was morning. I got out of bed and felt … lousy. Terrible pain. From the moment I woke up until I went to bed again that night.
Muscle spasms worsen everything. I was sitting at my desk, with the dull pain I’m used to in my left leg. As my son was showering, my left calf began to twitch. And not in its usual twitching spot — more on the inside of my leg. This was the outer side of my calf. My muscle twitched, and I tried to rub my leg. My muscle continued twitching, and I bit my finger. It finally stopped twitching and I had a really hard time getting up from my desk chair. I had an even harder time stepping into my own shower. My leg was tight when I went to bed that night and no different when I woke up with the alarm the next morning.
Rest doesn’t automatically mean relief. I have been making an effort to take time for myself. To rest. Not in the form of a nap, but sitting outside on our patio, reading a book. I usually spend my days taking care of household chores, dealing with appointments, and writing. But I have been making a conscious decision to set aside some time during the week — when my husband is at work and my son is at school — just for me. To sit in one of my favorite places, doing one of my favorite things. I hoped to notice an improvement — an increase in relaxation, a decrease in discomfort. Nope. Maybe it’s too soon. Maybe I need to do this more often, more consistently. In any event, I got in some extra reading time.
Pain levels fluctuate. When I spoke to my husband on one of his breaks, my pain wasn’t bad. It felt so good to be able to say that to him. By the time he called on his next break, about three hours later, it was bad. Pain-pill bad. I hadn’t done anything physically strenuous or anything I could see as a possible trigger (like gardening or standing on a step-stool to reach something on a high shelf in the closet). The pain shifted — from not bad to real bad. And for no apparent reason.
While our chronic illnesses and experiences are vastly different, the book is so very relatable. The bottom line is everyone living with a chronic illness and everyone who knows someone living with a chronic illness, should read this book.
I don’t remember how I first learned about this book. But I do know that this is one of the few books I have bought sight unseen. I bought it based on what I read about it. I bought it because I had a desire to read something by someone who “gets it.”
And Tessa Miller gets it:
“I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesn’t go away but won’t kill you. I needed someone who lives every single day with illness to tell me that 1) I wasn’t alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.”
“I didn’t know then that my life had changed forever. That I’d be able to divide my experiences into before I got sick and after I got sick.”
“I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, ‘this too shall pass.’ But what happens when ‘this’ never goes away?”
“And they shouldn’t doubt the level of pain you’re in just because you’re not writhing around on the floor; chronic illness patients learn to live with a shocking amount of physical discomfort and often go about it looking natural.”
“But grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnection from reality —but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”
“See, chronically ill people grieve two versions of ourselves: the people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined). There’s no guidebook for this kind of ongoing self-loss. No Hallmark card that says, ‘Sorry you’ll never be yourself again.’ “
“Your body and your brain are not two separate entities. They’re a partnership. What happens to your body affects your brain, and what happens to your brain affects your body. Taking care of your brain’s health should be no less of a priority than taking care of your body.”
“ ‘God doesn’t give you more than you can handle,’ as the saying goes. But that isn’t the way it works at all. Some people have more suffering, and some have less, and there’s no rhyme or reason why. Bad stuff happens to good people with no other explanation than it just happens. Little babies die suddenly and horrible old billionaires live to see 105 and decent people get sick forever. Shit will never make sense.”
“And despite what the writing of a memoir signals, I don’t love to talk about myself IRL; the page makes me appear much braver than I am. But despite the fear, I keep sharing my stories through writing because that’s how humans connect and stay alive. Stories give us empathy. They make us strong. They offer perspective.”
“Little does Ryan know that when I drive to school to pick him up, I’m usually rocking out. If I can’t find a good song on the radio (I like the spontaneity), I’ll play one of our mixed CDs. Ryan says the fact that our car plays CDs and doesn’t have an auxiliary jack for my phone makes it old – another faux pas.”
The paragraph above is taken from my most recently published personal essay, “Singing Out Loud Helps Ease My Chronic Pain (At the Risk of Embarrassing My Son)” which was published at Moms Don’t Have Time to Write.
The other day my next door neighbor asked, “How are you? How’s your health?”
I really wasn’t sure how to answer her. The short answer, and what I told her, is “Okay,” because I am okay-enough. I’m getting things done on my to-do list, keeping up with all my obligations, meeting all my writing deadlines, making dinner each night.
But the truth is it’s been a rough couple of weeks.
And sometimes I’m not so sure I really am “okay.”
The pain has been pretty intense. The other night when my mom and I were chatting on the phone, she asked me if I had done something that might have contributed to the bad pain day I was having. (I think she meant something like take a long walk or gardened for an extended period of time.)
I told her the truth. “I woke up.”
I woke up with bad pain. It stayed all day. Totally out of my control.
I’m also awaiting test results which is never an easy situation to be in. On the one hand, I never want doctors to find something new – which in my head means something scary, something bad. But on the other hand, if something did show up, maybe it would alter my treatment plan which would then maybe lessen my pain. Maybe it would give doctors an answer, so I wouldn’t have to hear, “We don’t know why…”
I received my booster for the covid vaccine. Which leaves me feeling oh-so-grateful to the researchers and scientists and medical professionals who made that possible. (And I feel badly, because I forgot to bring the nurse a snack. Each time our family has gone in for a covid vaccination shot, we’ve given the nurse a snack – a granola bar or bag of chocolate-covered almonds. It was a small way of saying “thank you,” and “we appreciate you.” But I forgot the snack at home on that Friday morning for the kind nurse who gave me my booster and chatted with me about books.)
And I almost fell. Twice in one week. Both times at night. Both times in my son’s bedroom – once before we read and once after we had read. I kind of flopped onto my son’s bed the first time and grabbed onto my husband’s arm the second time. But the incidents left me feeling shaken and scared.
It’s gotten to the point where I refuse to answer a nurse when he/she asks me, “What’s your pain level like on a scale of 1-10?”. (Just so you know, I don’t ignore the nurse. I simply explain I can no longer answer that question.)
I used to really try to answer. I’d look at the range of faces and short descriptions under the illustrations and try to figure out where I fit on that scale.
But now I realize there’s no point. My pain level can change from day-to-day, hour-to-hour, minute-to-minute.
And sometimes, many times, my pain level is irrelevant. It doesn’t matter how much pain I’m in. If it’s 3:00 on a weekday, then that means I need to pick up my son from school – regardless of how I feel. It’s non-negotiable.
I rarely let pain stop me from doing my daily activities. Because if I did, I wouldn’t do anything most days — at least lately. (The pain has been off-the-charts the last few weeks which means more doctors appointments and changes to my medications.)
But also, I wonder what long-term pain does to me — my body and my mind? I’ve been dealing with UCTD since 2010 (even though I didn’t know it was until my diagnosis in 2011). Ten years of pain has to warp your perception of discomfort. A “5” on my scale, I’m sure would be at least a “9” on my husband’s scale. (This may be a very bad generalization, but at least when it comes to my dad and my husband, they are not as pain tolerant as my mom or I.)
Here’s the other thing about pain. Everyone experiences it. In some way, shape, or form, everyone is dealing with something painful.
When you stop and think about it, that’s a powerful reminder to pause and really try to remember to treat others with compassion and kindness and patience.
Because you never know what someone is dealing with simply by looking at them.
“Even if I had pursued my first dream, if I had tried to become a United States astronaut, I wouldn’t have succeeded. Because now I know the truth. Apparently I’m claustrophobic.”
“The first time I had an MRI, I was completely unprepared for it. I thought an MRI would just be a fancy X-ray. Instead, I felt as if I was being swallowed up by a massive machine that slid me inside and wouldn’t let me back out. It was loud, it vibrated, and I felt like the whole thing was a very elaborate plan to see how long it would take until I cracked and pushed the panic button. (I kept it firmly in my grip, my thumb gently hovering above the button. Just in case. And to my credit, I’ve never used it.)”
On the surface you might not think my childhood dream of becoming an astronaut and my current identity as a chronic illness patient have anything in common.
But they do.
I’m proud to share my essay, “In Possession of the Enough Stuff,” has been published in SWFP Quarterly Special Issue 26. You can click here to read the essay in its entirety.
And, fun bonus! On Sunday, August 15th, Santa Fe Writers Project hosted an incredible reading on Zoom. I participated and read a portion of my essay. The whole reading was incredible, and I feel fortunate to have been a part of it. (If you’re pressed for time, I start reading at about 50 minutes in.)
“I lost my teaching career. Teaching was more than my job; it was my passion. My identity. However, the pain and fatigue from my autoimmune disease (Undifferentiated Connective Tissue Disease) made it necessary for me to ‘retire due to a disability.’
I found my second career, as a writer. Since I was no longer teaching full-time, I could write full-time. Personal essays I submit to literary journals and anthologies. Blog posts for my personal website. Assignments as a regularly contributing writer for a popular family-oriented website, MomsLA.com.”
My personal essay, “Lost and Found,” is a series of reflections — about what I have lost as a direct cause of my autoimmune disease and what I have found as a result. It’s a way of acknowledging the ways I have changed, the ways my life has changed.
“Lost and Found,” was recently published in the Summer 2021 issue of Breath and Shadow. You can click here to read the essay in its entirety.
When it comes to the most important roles in life (in my opinion – spouse and parent) no one gives you a handbook with practical, helpful tips and tricks.
And so it was when I received my autoimmune disease diagnosis. My rheumatologist gave my illness a name, and started me on medication, but he didn’t provide any advice on what it would mean for me long-term, what I should do that day, and the day after, and the day after that one.
Thankfully there are other patients out there, telling their stories and sharing their experiences.
It is the book I wish my doctor had handed me that November morning all those years ago.
While I admit some of the advice and some of the anecdotes don’t apply to me (I’m not trying to decide if I can move out of my parents’ home, for example) I’m still glad I read it. And as you can see from the photo, I still found a number of passages to highlight and mark with sticky notes.
“Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future.” (So beautifully put)
“Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart.” (I haven’t figured that part out yet. I admit, most of the time I’m still trying to resist my chronic illness, still trying to prove I’m tougher and stronger than it is.)
“Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.” (I had never thought of acceptance in terms of self-respect.)
“Learning how and when to ask for help is going to be a huge asset to you in life.” (I continue to struggle with this one.)
“It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion.” (An important lesson for every human being.)
It began with my ponytail phase. Every picture in my mom’s photo album shows me with my hair pulled back into a ponytail. The photos didn’t capture the back of my head and the way I carefully color-coordinated my ponytail holder with the day’s outfit.
When I entered my teenage years, I attempted to dress my hair with a variety of colorful clips and barrettes. I hoped to turn eyes away from the red pimples on my forehead and cheeks.
By my senior year in high school, I had grown my brown-M&M-colored hair down to my waist in hopes of distracting from the worsening acne on my face.”
The paragraphs above are from my most recently published essay, “A Soft Strength.” You can click here to be re-directed to HerStry and read the essay in its entirety.